|
 |
"For those of you who were new comers I can't even express what your presence had done for me. Actually that is what this message is all about:
Two years ago I came to my first conference and I loved every minute of it but I didn't realize until I got home how overwhelmed I was feeling by all my thoughts, hopes and even my fears. So for those of you who get that feeling please know that it's going to be OK. We are all here for you!
Until next time, I will always cherish talking in the pool, over dinner, or up until two in the morning sharing stories of where we have been and where we're about to go. It takes a special person to raise a "special" person and I commend all of you who do it.”
~ Priscilla Dotson
Cincinnati, Ohio
|
|
|
|
|
 |
 |
|
|
|
|
The 22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group convenes every two years to give families a chance to meet others who have children affected by 22q13 Deletion Syndrome and to learn the latest information on therapies, medical issues and coping with a special needs child.
The Support Group’s first meeting in 1998 was underwritten by The Greenwood Genetic Center in Greenwood, South Carolina and the Mikel Foundation of Sullivan’s Island, South Carolina, a charitable group interested in helping families with special needs children.
Twenty of the original 23 families diagnosed with children with 22q13 Deletion Syndrome attended the first meeting. Our numbers have grown every time since then. We had our fourth conference in July 2004, which was attended by 60 of our nearly 200 families. In 2006, 100 families of our nearly 300 dignosed attended the conference in Greenville, SC.
One of the most valuable aspects of the meetings is the time to interact with other parents and children. This has always been an invaluable experience for families, especially newcomers, who gain inspiration from each other and strengthen the family bonds we all nurture.
Current 2008 Conference Information:
Archived 2006 Conference Information:
|
 |
 |
|
“Thanks to everyone who helped make this, our first conference, a blessing in our lives. We have a long awaited second wind and now have renewed the interest in our extended families lives."
~ Mark Quattlebaum
South Carolina
“Welcome Home! I just couldn't pass up the chance to send out a virtual hug to each and everyone. This conference was just phenomenal! Thank you for everyone who came and to those who made our Foundation even possible. I know this Support Group has changed my life and the lives of many others. Please know that your hard work will never go unrecognized in my eyes."
“… For those of you gave me a shoulder to lean on please know that it will never be forgotten. You and your children all hold a very special place in my heart. I reunited with old friends and it was like those two years that passed didn't even exist because we picked up where we left off..."
“Jaedyn traveled the 16 hour drive home extremely well. We're very tired but happy to be home, and extremely pleased with the people we met and the information we gathered at the conference.”
~ Jim Quigley and Lori Harris-Quigley
Canada
“Well, we finally made it home to Australia. We have had an absolutely amazing time. … I would like to give a special thanks to everyone who put his or her time and energy into making the conference a success. If it weren't for all of you Chris, our family and I wouldn't have had such an amazing experience.
"We absolutely loved the weekend in Greenville. We wish it could have gone on for longer. I guess all good things must come to an end at some point. If anyone hasn't been to a conference and is not sure whether you should attend or not, please do not hesitate for a second.”
~ Penny and Chris Walker
Australia
|
|
 |
|
|
|
 |
|
|
|
